Category Archives: Ann’s Update

For the past week, I’ve been battling severe back pain, which will presumably disappear (at least for a while) on Friday, when I get my bilateral steroid back injection. The pain makes me feel like an old, stooped, withered great-great-grandmother — the kind whose voice is a quavering whine. Okay, maybe my body is slightly — uh — well, sort of old-ish, maybe, but my ravishing beauty is barely — er — well, never mind.

Along with the pain (actually, the “pain” is controlled pretty well by pills) goes a general feeling of weakness in the spine and legs, and that leads to a sense of exhaustion which is as much mental as physical, leading to depression (which I’m inclined to anyway), not intense, but enough to make it very hard to convince myself that there’s anything worth getting out of bed for. Some days are better than other days.

One of the things that I have let drop, temporarily, due to this generally icky state of mind, is Caring Bridge. After the injection Friday, I’ll feel a return of meaning and intent and interest (I hope and believe), and I’ll sit down and continue communicating. Until then, I ask you to understand and be patient — as I have so often — and I send you thanks and blessings.

See you this weekend. Don’t forget the Oscars (those who loathe them or couldn’t care less ignore this) on Sunday. My family members are for the Black Swan and the King’s Speech.

Dear Everyone (except males between ages 15 and 34 living in Nigeria),

Let’s see what reaction THAT brings about! The China remark and its responses brightened my day immensely, since it inspired a couple of tiny surges of adrenaline in me (in obvious response to the tidal waves of adrenaline in those who responded), and if there’s anything I need to help me get out of bed, it’s a pile of tiny surges of adrenaline.

We are getting better and better (“we” meaning Sasha), but there’s one problem that remains, of course: the one that makes it necessary to have 24-hour caregiving. Sasha’s brilliant mind (over 180 I.Q.) is, as you know, suffering from mild dementia. We’re finding out a lot about so-called dementia. For one thing, the state of mind — the acuity of mind — varies tremendously over every 24-hour period. There are days when he’s at the top of his form, as the British say, full of puns and funny comments, and when he’s in the lab (three times now), his chemistry is right there, with a few small holes here and there, but basically intact.

But at night (thus the term, “sundowning”), there is anything from mild misperception to frank hallucinations. And, unlike what one would expect, his profound experience with altered states doesn’t help him, because these states are full of anxiety and unease. Even when he’s having no pain from the peripheral neuropathy, he’s inclined to lie in bed and toss and turn, and when you ask him what’s wrong, he says, “I don’t know,” and if you ask if he has pain, he says, “I don’t know,” and then he argues for getting back into the Lazyboy chair (where he’s spent many hours in the evening), where he’ll go to sleep — usually. The only thing wrong about this sequence of events is that, unless he spends some hours with his feet up on the bed, his feet will begin to swell. The only thing wrong with swollen feet is that they are inclined to produce small cracks in the thin skin, and those cracks can form ulcers, and ulcers are what we’ve been fighting for the past year. With less than good blood flow, ulcers are real trouble, and they just won’t heal.

It’s possible that some of the sundowning at its worst may be due to one of his meds., Lyrica, which is one of the few good nerve pain medications available. One of its nastier side-effects can be, “mood-alteration,” which is pharma-speak for “messing with your head.” So we might be faced with a choice: attacks of nerve pain, or increase in sundowning. Even if we had no drugs that affected the mind, Sasha would still have a certain amount of sundowning, because it’s one of the things that goes with dementia. I’m grateful that it isn’t worse than it is, but one hates to see it there at all. I’m also aware of the fact that my reaction to it is part of the remaining shreds of denial — my semi-conscious refusal to accept the existence of any dementia at all.

My problem, not his.

We’ll see what the doctor says.

Bedtime. I should get on the stationary bicycle, because my legs are feeling very tired and achy, and I’ve got to get their strength back. But bed is so much more inviting.

4. Going on errands that should have taken 1/2 hour and actually took three hours.

5. Recovering from same.

6. Promising myself that I’d done everything I needed to do in the outside world, only to discover five errands that were urgent (the next day) and taking two to three hours to do them (how do you underline words in this program?) and two hours to recover again.

8. The revolution in Cairo. I have an answer for what should happen next in Egypt. There should be a Golda Maier (Mayer? Meier?) — with an Egyptian name, of course — an educated woman, a mother and maybe grandmother, who can fearlessly offer herself as transitional communicator between the people
and the government. She would be welcomed instantly, for reasons I will offer next time, and Egypt will step into the 21st century.

9. I’m tired, and I’ll continue this tomorrow evening. I will also answer those who got their panties in a bunch over my China comments (which delighted me, by the way). During the day tomorrow, I will be Nanna, and will regain what I have left of my mental health.

10. You are good people — at least, most of you are, at least most of the time, and I send my love to you all.
Blessings — Ann

P.S. Sasha is doing very, very well, and has gotten back to the lab again, this time for over two hours, today. He becomes much happier when this happens. And his chemistry memory seems to be very good indeed. And the Shulgin Index will be available, the printers say, the first week in March!

Dear People All over the World, including China, unless the people in China are among those who believe that Tibet is better off as part of China than before they were part of China. Although I don’t wish to alienate any nice people in China, they must understand that I am a devoted admirer of the Dalai Lama and all the people of Tibet who resisted the invasion of Big Brother China. I would not have expanded on this except for Greg, who always puts my writing onto Caring Bridge and Facebook, and who phoned me today when I was driving in town (without my head set) and asked me (referring to yester– oops — several days ago, when my salutation included the words, “except the people of China,” or something like that), and asked me, “Why?”

My reply was rather scattered, since a corner of my mind was busy trying to identify possible policemen or other law enforcement who might notice that I wasn’t talking into a headset, and subsequently levy upon me a fine of huge proportions. And they would be right. I believe in headsets while driving and also while not driving, and I own two of them, but don’t know where they are at the moment.

Since then, I’ve reviewed the part of my brain that contains files called “China and Tibet,” and re-affirmed my strong feelings about that subject. That’s why you are being subjected to all this. I’m out of the China closet. Actually, that used to be (in the late 1800’s) called the China cabinet, but —- Never Mind.

Where was I?

Oh, yes. Hello, Dear People of Everywhere,

Today was one of the Big Days. Sasha actually walked all the way to the lab, and took his seat inside, with his caregiver present, and began talking chemistry with Paul, who took some fantastic photos. Tania joined them at one point, and there is a great picture of all three of them, smiling broadly.

We are (meaning the two girls/women/ladies and I) gradually getting a picture — sort of — of Sasha’s pain problems, the where and the why. His Achilles tendon and the heel have become almost-perfect examples of superb Western medicine and what can be done by really good Western surgeons. The original angels are, of course, Drs. Howard Kornfeld and Paul Abramson, who pointed us in the direction of said surgeons. Without them, we would never have heard of doctors who label themselves “Limb Savers,” and we probably would have lost a foot by now. And, yes, we all would have lost that foot.

In the evenings, Sasha’s needle pains attack his leg, and they are now being understood as the results of the peripheral neuropathy, and he’ll probably continue having that problem. We’ll do our best to make him as healthy as possible by means of diet (fresh fruits and veggies, protein, vitamins, etc.) as well as exercise. Following the advice of a very wise person, we’re giving him goat’s milk and Basmati rice, and these do actually help reduce swelling in his feet, which is a real concern. But we’re all still learning. Every night is a bit different. When he can be persuaded to stay in bed most of the night, the foot swelling is gone by morning. When his pain makes it necessary for him to sleep in the Lazyboy chair, the swelling is still present when he wakes up. But all of it is getting better.

Sasha’ mental state seems to have improved during the day, since he came home from hospital, but the “sundowning” is almost always present, to some extent, by the time evening comes. His chemical knowledge is still there, though, and now that he can work in the lab with Paul, it will probably sharpen and improve, along with his analytical ability and other aspects of his mental functioning. But he can’t be left alone, because there’s too much risk of falling, among other things. So we continue to fund-raise, because we’ll need 24-hour a day help for the rest of Sasha’s life. So far, as I’ve said many times, we’ve been amazingly lucky in our caregivers, with perhaps a single exception, but we’re busy taking care of that exception. We seem to have attracted really lovely human beings — funny and caring and patient — and may it continue to be so. With Tania and Greg as our right and left arms, all we can do is give thanks (and feed them all Basmati rice).

For the moment, this is all. When Greg returns from his mother’s funeral, I’ll write more.

Love and thanks to all of you. Sleep well and dream in color (unless you don’t want to). Ann

Sorry again. It was impossible to get to my computer, and I’ve got to get some sleep. Tomorrow, however, is a day without visitors, one hundred and five errands, etc., and I think I’ll actually be able to get some urgent things done, and also WRITE. To all of you. Sasha updates (good) and stream of unconsciousness (no comment). I promise. I give my word(s).